Nurses’ experiences of caring forpatients with intellectual developmentaldisorders: a systematic review using ameta-ethnographic approachMarie Appelgren1,2* , Christel Bahtsevani1 , Karin Persson1 and Gunilla Borglin1
Abstract
Background: Research suggests that registered nurses (RNs) do not feel adequately prepared to support patientswith intellectual disability disorder (IDD). This is unsurprising, as few European health sciences curricula includeundergraduate and graduate training courses in IDD. As RNs are often in the front line of care, eliciting in-depthknowledge about how they experience nursing this group of patients is vital. Our aim in this study was to developa conceptual understanding about RNs’ experiences of nursing patients with IDD.
Method: We undertook a systematic review and meta-ethnography to synthesise qualitative research studies foundin PubMed, CINAHL, PsycINFO, ERIC databases and by manual searching to identify additional studies. Wecondensed translatable second-order constructs, and developed an idiomatic translation. Finally, we formulated lineof argument (LOA) syntheses to capture the core of the idiomatic translations.
Results: We included eighteen published studies from eight countries involving 190 RNs. The RNs’ experience ofnursing patients with IDD were reflected in 14 LOAs. Six of these reflected a tentatively more distinctive and attimes unique conceptualisation of RNs’ experience of nursing this group of patients. The remaining eight LOAsrepresented a conceptualisation of nursing per se, a conceptualisation of nursing that was interpreted as a universalexperience regardless of context and patient group.
Conclusion: Lack of awareness and knowledge are likely breeding grounds for the ‘otherness’ that still surroundsthis group of patients. In encounters between patients and RNs, focusing on the person behind the disability labelcould be one way to secure relevant nursing care for patients with IDD. Undertaking appropriate under- andpostgraduate education alongside the implementation of nursing models focusing on patient-centred care wouldhelp RNs in reducing the health and care inequalities this group of patients still face.
Keywords: Care, Idiomatic translations, Intellectual disability disorder, Line of argument synthesis, Qualitativeresearch, Qualitative synthesis
* Correspondence: [email protected] of Care Science, Faculty of Health and Society, MalmöUniversity, SE-205 06 Malmö, Sweden2City of Malmö, Borough Administration Operation Support Management,SE-205 80 Malmö, Sweden
BackgroundPromoting the health of patients with intellectual devel-opmental disorder (IDD) should be of universal concernto all nurses. People with disabilities have the same rightto the highest attainable standard of health as everybodyelse [1]. Despite this, there seems to be little discussionabout their actual health needs. How registered nurses(RNs) should be educationally prepared to support thisgroup of patients and what role they should play in ad-dressing their health needs is under-researched in theinternational nursing literature [2]. Additionally, thebulk of research seems to have focused on parentingchildren with IDD [3], parents with IDD [4], health andsocial care for those with a dual diagnosis, for example,IDD and somatic health problems [5], challenging be-haviour (CB) associated with IDD [6, 7] and burn outamong frontline carers of people with IDD [8]. There-fore, research investigating how RNs experience nursing,for this vulnerable group of patients is vital for know-ledge development within nursing across health caresettings.One of the major challenges in nursing patients with
IDD appears to be that RNs in general health care set-tings are not adequately prepared to support their healthneeds. This is also true in the acute care settings [9]. Be-cause these patients are not viewed as a distinct and vul-nerable group with health care needs outside those ofthe general population, the necessary education andtraining for health care staff has not been put into place[10]. In these circumstances, it is highly likely that inhealth care staff will not understand specific issues relat-ing to IDD or that reasonable adjustments in care areneeded for this patient group. Melville and colleagues[11] have identified a clear knowledge gap among healthcare practitioners with only 8% of the RNs in their studyreceiving learning disability-related training. In their sys-tematic review, Bradbury-Jones and colleagues [12]highlighted health care professionals’ limited knowledgeabout IDD and concluded that patients with IDD aremisunderstood in care. The literature also reports thatthere are international disparities in educational levelsfor health and social work staff. It appears reasonable topropose that a lack of preparation and knowledge is themost likely explanation for these reported problematicattitudes and negative behaviour among health care pro-fessionals in relation to this patient group [13, 14]. Forexample, in a study by Lewis and Stenfert-Kroeses [15],nursing staff at a general hospital reported less positiveattitudes concerning caring for patients with IDD com-pared to caring for patients with somatic disorders. In-difference and negative attitudes can lead to negativeconsequences in terms of quality of care for this patientgroup as evident in a recent Mencap report [16] and inthe Confidential Inquiry into premature deaths of people
with learning disabilities, CIPOLD [17] from the UnitedKingdom (UK). Such negative behaviour and attitudes,together with a lack of training in good practice is likelyto negatively affect the quality of nursing offered to thispatient group. This is particularly distressing as these pa-tients experience the same range of health problems asothers but, according to Cooper and colleagues, [18]with an increased risk of co- or multimorbidity in com-parison to the wider population. However, the pattern ofillness they experience may be different [19], leading toincreased frailty that predisposes them to an earlier bur-den of disease [20]. According to Campbell [21], patientswith IDD have more complex health needs than the gen-eral population but face much greater difficulty in get-ting good and adequate health care. This is supported byBrown and colleagues [22], who state there is evidencethat these patients’ needs are often poorly meet byhealth services, with many experiencing significant bar-riers to accessing health care appropriate for their indi-vidual requirements. This is further underlined byHeslop et al., [17] who in their investigation into prema-ture deaths of people with intellectual disability in theUK, found that problems with the provision of care e.g.problems in advanced health and care planning, includ-ing recognising needs and adjusting care as needschange, together with problems with service provisione.g. delays in the diagnosis and treatment of health careproblems, contributed to deaths that were significantlydifferent for a subset of people with intellectual disabil-ities and comparator cases. Registered Nurses thereforeshould have an important role in caring for patients withIDD, particularly as they are expected to lead nursingcare and to support health care assistants and/or assist-ant practitioners in caring for this growing group ofpeople.In the past 40 years, developed countries have seen
far-reaching and radical changes in peoples’ attitudes to-wards people with IDD. A growing emphasis on theprovision of services in the community has led to theclosure of long-stay hospitals and institutions, withgreater inclusion in wider society [23]. An increase inhealth screening and medical interventions has resultedin a greater awareness that this group of people will livelonger. According to Ervin and Merrick [24], the num-ber of adults with IDD aged 60 years and older is ex-pected to reach 1.2 million by 2030. However, accordingto Innes, McCabe and Watchman [25] there is no corre-sponding evidence regarding how support will andshould be provided. It is therefore probable that RNs, re-gardless of in which health care setting they work, willencounter this patient group on a more regular basis,presenting a challenge for the health care professionalswho need to provide them with care in a timely andrelevant manner. Therefore, it is particularly noteworthy
Appelgren et al. BMC Nursing (2018) 17:51 Page 2 of 19
that the majority of European countries, with the excep-tion of the United Kingdom and Ireland, provide fewundergraduate and graduate training courses in IDDwithin their health sciences curricula. Therefore, not allEuropean patients with IDD will meet RNs with therelevant competence and skills needed to offer adequatenursing to these patients. Consequently, knowledge onhow to organise and deliver optimal and safeevidence-based care to this population is of huge im-portance. Some good practice models with regard to thenursing of this patient group for example, hospital pass-ports, legislations on reasonable adjustments, health ac-tion plans and hospital liaison RNs, are evident,especially in the UK but the evidence indicates there isstill some way to go to embed these practices elsewhere.As RNs are often on the front line of both primary andsecondary care, it seems natural that as a professionnurses engage in knowledge development within thisfield, particularly as the evidence base for IDD nursingpractice remains limited in both quantity and quality[26]. Therefore, the overall aim of this systematic litera-ture review is to develop a conceptual understanding ofRNs’ experiences of nursing patients with IDD.
MethodThe design of this meta-synthesis was influenced by themeta-ethnographic method described by Noblit andHare [27]. The growing use of this method in health ser-vices research [28] means the method has evolved.Meta-ethnography is an interpretive rather than an ag-gregate form of knowledge synthesis and accordinglyaims to develop conceptual understandings—in this caseabout RNs’ experience of nursing patients with IDD—ra-ther than to provide an aggregate account of findings[27]. Our design is equally informed by other more re-cent methodological accounts [29, 30].
Search strategyWe designed our search strategy, overall study designand structure for this meta-synthesis in accordance withthe Preferred Reporting Items for Systematic Reviewsand Meta-analyses Statement for Protocols (PRISMA-P)[31] (Additional file 1). We developed our search strat-egy using a modified form [32] of the SPIDER tool de-veloped by Cook and colleagues [33], including termsfor sample, phenomenon of interest and research design(Table 1). We conducted an initial scoping search to gainan understanding about how studies might be indexedand to find terms used in titles and abstracts. This initialsearch was also done to assess the suitability of the re-view questions and to understand what literature vol-umes to expect [34]. Our initial scoping search indicatedwe would not end up with an unreasonable number of
papers; therefore, we set no limitations in terms of datesfor our searches.We initially searched PubMed, CINAHL, PsycINFO
and ERIC in November 2016 (Additional file 2). Due toa time lapse between the search and the synthesis, weconducted a repeat search just before work on the syn-thesis began (November 2017) to ensure all relevant pa-pers were included. We identified no additional studiesof relevance. We used free-text terms to access studiesnot yet indexed and database-specific subject headings.To identify pertinent search terms in the databases, wetransformed terms into medical subject heading (MeSH)terms and/or headings (e.g. intellectual developmentaldisorder, nursing, experiences, qualitative research). Wecombined search terms with the Boolean operator OR tomake the search sensitive and then with the Booleanoperator AND to assure specificity within the searchstrategy [35].
Selection of studiesWe included studies if they (i) were in English, (ii) werepublished in a peer-reviewed journal, (iii) used qualita-tive methods and demonstrated qualitative analysis and(iv) reported the experiences of nursing for adults withIDD regardless of health care context and the RNs typeof education. We used the ICD (International Classifica-tion of Diseases) 11 definition of IDD, which is ‘a groupof conditions characterised by significant impairment ofcognitive functions, which are associated with limitationsof learning, adaptive behaviour and skills’ [36]. We usedthe International Council of Nurses (ICN) definition ofnursing, which is the ‘autonomous and collaborative careof individuals of all ages, sick or well and in all settings.Nursing includes the promotion of health, prevention ofillness, and the care of ill, disabled and dying people’ [37].Our decision to include any type of qualitative design wasbased on the assumption that regardless of individualmethodology, qualitative designs overall derive from thesame epistemological and ontological perspectives.We excluded studies if: (i) they used mixed methods
where qualitative data could not be separated out; (ii)data analysis was lacking the necessary conceptualdepth, that is, we assessed it as only containingnon-translatable concepts [29]; (iii) data from RNs couldnot be distinguished from those of other health care pro-fessionals or if informants could not be identified as
Table 1 Breakdown of the research question
SPIDER heading Search topics
S - sample Nurses
PI – phenomenon of interest Nursing for persons with intellectualdisability disorders
D & R – design and research type Qualitative research
Appelgren et al. BMC Nursing (2018) 17:51 Page 3 of 19
RNs; (iv) data were derived from open-ended questionsin surveys.The first author (MA) screened the 3111 studies by
title and abstract, resulting in the exclusion of 3045studies. Following the application of the inclusion andexclusion criteria to the 66 studies read in full text, afurther 35 (Additional file 3) studies were excluded (SiftI), leaving 31 studies assessed as eligible for inclusion(Fig. 1). No further studies were located via a manualsearch of reference lists.
Data extractionThe first author (MA) critically appraised and extracteddata from all included studies after Sift I from all 31studies. Two of the co-authors (CB and KP) acted assecond reviewers of 10 studies each, while the thirdco-author (GB) acted as second reviewer of 11 studies.
We developed our appraisal and data extraction proto-cols based on the ideas of Toye et al. [29] and Schütz[38] regarding first- and second-order constructs com-monly used in meta-ethnographic studies to distinguishthe data [29]. Next, we extracted data relating to studydesign, nursing focus, IDD focus, context, sample sizeand demographics (gender, education, years of practice),methodology, data collection and data analysis methodsand clearly articulated second-order constructs, such asconcepts, metaphors, themes and/or categories, (a copyof the data extraction protocol can be obtained from theauthors). To be included in the meta-synthesis of this re-view, concepts needed to go beyond description alone,in accordance with Toye and colleagues [29]. This meansthat concepts should explain the data, that is, to betranslatable. We consequently excluded all second-orderconcepts independently assessed by both reviewers asnon-translatable. Schütz [38] makes a clear distinction
Fig. 1 Flow chart literature search
Appelgren et al. BMC Nursing (2018) 17:51 Page 4 of 19
between first-order constructs, that is, the participants’interpretation of their own words, and second-orderconstructs, that is, the researchers’ interpretation of theparticipants’ first-order constructs. We extractedsecond-order constructs relevant for our review questiontogether with underpinning text and later each pair ofreviewers read and assessed them as either translatableor non-translatable second-order concepts.
Quality appraisalWe conducted a methodological quality appraisal of thestudies, following the conceptual model for quality ap-praisal of Toye et al. [29]. Their model suggests two corefacets of quality for inclusion in meta-ethnography, asfollows:
1) Conceptual clarity: How clearly has the author(s)articulated a concept that facilitates theoreticalinsight?
2) Interpretive rigour: What is the context of theinterpretation? How inductive are the findings?Has the interpretation been challenged?
In accordance with Toye et al. [29], we categorisedeach study as either a key paper (KP), a satisfactorypaper (SP), a fatally flawed paper (FFP) or an irrelevantpaper (IRP). If there was any disagreement between thereviewer pairs, a third reviewer reviewed the studies,which occurred in one case. During this process (Sift II),12 further studies were assessed by both reviewers asIRPs (Additional file 3) and were therefore excluded; thisleft 19 studies.
Data translation and line of argument synthesisBased on our developed appraisal and data extractionprotocol, we transferred data into a Word document i.e.to a synthesis matrix including study identifier andtranslatable second-order concepts with supporting textexplaining and describing the concept for each study.We created free space in the matrix for our non-linearprocess of condensing the supporting content intoidiomatic translations focusing on salient categories ofmeaning rather than the literal translations of words orphrases [27]. According to Campbell and colleagues[39], it is in the translation that data becomes synthe-sised; thus, a full understanding of the concepts can bereached. We continuously compared the meaning—thecore of all translatable second-order concepts. The firstauthor (MA) and the last author (GB) worked in closecollaboration throughout the process, and every step ofthe process was discussed by all the authors at meetingsabout twice a month. This meant that the condensationsand idiomatic translations evolved in a dynamic inter-pretative process that helped us identify similarities and
differences within and across the included studies. Wethen formulated a line of argument (LOA) synthesis,capturing the core of our idiomatic translation. TheLOA synthesis represented those translatable conceptswithin and between studies, interpreted to represent thesame core meaning [27], that is, an overarching concep-tual understanding of the experience of nursing patientswith IDD (Table 2). We thereafter re-examined andre-assessed each study for its relevance to each individ-ual LOA synthesis and checked the relevance of our in-terpretations. During this process, we identified onefurther study as an IRP (Additional file 3), leaving 18studies in the final synthesis (Fig. 1).
ResultsWe included eighteen studies involving 203 informants(5–27 informants per study) in this review (Table 3).About 70 of the informants were either described as be-ing an intellectual disability or a learning disability RN,and 133 of them were described as being general RNs.Most of the studies were conducted in the United King-dom (n = 9), followed by Ireland (n = 3) and NorthernIreland (n = 2). The remaining studies were conducted inCanada, Sweden, the United States and New Zeeland.Eleven studies were categorised as reporting on a quali-tative study guided by an explicit set of philosophical as-sumptions in the form of one of the known classicalqualitative designs (CQDs), while seven studies werecategorised as having generic qualitative research designs(GQDs) [40].
Line of argument synthesisOur LOA synthesis represents 18 studies contributing 47second-order concepts we assessed as translatable. Wecategorised ten (55%) of these as FFPs; these contributed28 translatable second-order concepts (59.5%) to the syn-thesis. We categorised six studies as SPs which contrib-uted 17 translatable second-order concepts (36%). Wecategorised two papers as KPs that contributed two trans-latable second-order concepts (4%). Only second-orderconcepts assessed by two independent reviewers as trans-latable were included in the synthesis. We assessed 14second-order concepts as non-translatable, representingeight studies which were, therefore, excluded from thesynthesis (Table 3).We interpreted our synthesis to represent 14 LOA
syntheses (coded from A to N), helping us to conceptu-ally clarify the experience of nursing patients with IDD.The LOA synthesis, ‘nursing experienced as needing totake unpredictable situations into account’ [41–44] wasonly represented by studies assessed as SPs or KPs. TheLOA synthesis ‘nursing experienced as needing to entailadvocacy and safe guarding’ [45, 46] was only repre-sented in studies assessed as FFPs. The remaining 11
Appelgren et al. BMC Nursing (2018) 17:51 Page 5 of 19
Table
2Exam
pleof
thesynthe
sisprocess
Stud
yno
./Referen
ceTranslatable
Con
cept
(TC)
Sub-catego
ries
Con
tent
supp
ortin
gTC
Idiomatictranslation
Line
ofArgum
entsynthe
sis
S1.D
onovan,2012.
[48]
Theimportan
ceof
acaring
relationshipwith
theclient
NA
Participan
tsindicatedthat
anin-depth
relationshipwith
theclient
was
importan
tto
them
.Thisha
doftendevelopedovera
long
periodof
timean
denabledthem
torecogn
izetheoften-subtlechan
gesin
temperamentor
beha
vior
that
hadoccurred.
Nursing
peop
lewith
IDDcanmeanhaving
along
-term
in-dep
threlatio
nto
beableto
read
andto
unde
rstand
thepe
rson
Basedon
long
-term
relationship[A
a ]
S26.Slevin
&Sine
s,2005.[52]
Relationa
ltherapeutics
NA
Form
ingtrustingrelationships
wereconsidered
essential.Buildingcaringrelationships
was
not
onlyconsidered
tobe
valuablefortheclient,
butaho
listic
approach
was
followed
inwhich
therelationshipwith
thetotalfam
ilywas
developed.Thevalueplaced
onahu
man
istic
approach
incaringwas
evident.They
wish
edto
empowerparents/clientsan
dto
dothisthey
developedrelationships,trust,and
aligned
them
selves
with
thefamily.
Nursing
peop
lewith
IDDcanmeanhaving
anin-dep
threlatio
nbo
thwith
thepatient
andhis/he
rrelevant
othe
rsin
orde
rto
beableto
provideacare
that
empo
wer
all
includ
ed
Basedon
long
-term
relationship[A
a ]Restits
foun
dationon
trust[B]
S21.Nde
ngeyingo
ma
&Ru
el,2006.[54]
Thechalleng
eof
assuringthe
expected
levelof
quality
care
Challeng
esrelatin
gto
organizing
care
delivery
Twomainchalleng
esdirectlyaffectingnu
rsing
carewereidentified:man
agingpatients’
beha
vioralreactions
andcommun
ication
difficulties.Participan
tsperceive
evaluations
ofthesepatientsto
beincomplete.They
cann
otexplaininterventions
orrespon
dto
patients’
needsas
they
wouldlike.Aparticipan
texem
plifies:“Thereisalwaysadiscom
fortwith
apatient
who
hasan
ID;w
eareno
tused
tothat...Iha
vesometimes
been
alon
ewith
such
aclient,and
honestly,herreactions
asI
approached
totake
hervitalsigns
mademe
feelhelpless”.
Nursing
peop
lewith
IDDcanmeanhaving
challeng
esin
managingthepatients´
behavior
andin
commun
ication
Gobe
yond
verbalcommun
ication
alon
e[C
a ]
S12.Morton-Nance
&Schafer,2012.[51]
Commun
ication
NA
Commun
icationwas
amajor
barrierto
understand
ingpatients’needs.Difficultiesin
commun
icationbetweenhealthcareprofessio
nals
werethough
tto
affectthequality
ofpalliative
care.Participan
tsraisedconcerns
aboutafailure
toshareimportan
tinform
ationappropriately,
makingitdifficultto
meetpatients’basic
needs.
Patients’inabilityto
commun
icatetheirneeds
was
though
tby
participan
tsto
exacerbate
problems.Inexperiencean
dlack
ofun
derstand
ing,
skillsan
dtraining
onthepartof
somecareers
significan
tlyaffected
quality
ofcareat
theend
oflife.
Nursin
gpeop
lewith
IDDcanmeanchalleng
esinregardsto
commun
icationbetweenpatients,
health
care
professio
nalsandrelevant
others.
Nursin
gpeop
lewith
IDDcanmeanchalleng
esinregardsto
theskillsandabilitiesof
HCP
swhich
leadsto
unmet
needsandpo
orqu
ality
ofcare
Gobe
yond
verbalcommun
ication
alon
e[C
a ]Raisethebarin
care
forpatients
with
IDD[G
a ]Ad
ditionalperspective
from
thecoreconceptualization:
e.g.as
ineliminatingun
met
care
needs
a =LO
Asynthe
sisinterpretedto
represen
tatentativelydistinct
concep
tualizationof
nursing
Appelgren et al. BMC Nursing (2018) 17:51 Page 6 of 19
Table
3Overview
includ
edstud
ies
Stud
yStud
yaim
Sampleandcontext
Metho
dological
approach
Datacollectionand
analysis
2ndOrder
Con
cepts
LOAsynthe
sis
Qualityappraisal
(Toyeet
al.,2013)
Blackm
ore,2001,
UnitedKing
dom.
(S23
)
Explorelearning
disability
nurses´pe
rcep
tions
abou
ttheirrolein
advocatin
gfor
clientswho
have
ID+ph
ysical,
sensoryandcommun
ication
disabilities
N=8RN
LDsGen
der
notknow
nCom
mun
ityTrust,LD
Directorate
Gen
ericqu
alitative
design
Semi-structured
interviewsCon
stant
comparison
Translatable2n
dorde
rconcep
tsn=2
Non
-translatable2n
dorde
rconcep
tsn=4
[Fa ]Workagainstne
gative
attitud
esandalienatio
n[M
]Entailadvocacy
andsafe
guarding
Fatally
flawed
pape
r
Boarde
r,2002,
UnitedKing
dom.
(S28
)
Obtainan
overview
ofCom
mun
ityLearning
Disability
Nurses´pe
rcep
tions
oftheir
work
N=20
RNLD
sGen
derno
tknow
nNHSTrustsin
Wales
Gen
ericqu
alitative
design
Semi-structured
interviewsCon
tent
analysis
Translatable2n
dorde
rconcep
tsn=3
Non
-translatable2n
dorde
rconcep
tsn=1
[Fa ]Workagainstne
gative
attitud
esandalienatio
n[G
a ]Raisethebarin
care
forthis
patient
grou
p[N
a ]Und
erstands
thecomplexity
ofthispatient
grou
p
Fatally
flawed
pape
r
Cam
pbell,2011,
UnitedKing
dom.
(S16
)
Describeparticipants’
emotionalrespo
nseto
violen
ceandto
explorewhat
supp
ortthey
requ
irein
dealingwith
constant
expo
sure
toworkplace
violen
ce.
N=6RN
sGen
der
notknow
nUnitfor
adultswith
IDand
challeng
ing
behaviou
r
Gen
ericqu
alitative
design
Semi-structured
interviews,Them
atic
analysis
Translatable2n
dorde
rconcep
tsn=2
Non
-translatable2n
dorde
rconcep
ts=0
[Ja ]Take
unpred
ictable
situations
into
accoun
tSatisfactorypape
r
Don
ovan,2012,
UnitedKing
dom.
(S1)
Describetheexpe
riences
ofLearning
Disability
Nurses
whe
nthey
arewith
clients
who
may
bein
pain
butwho
cann
otcommun
icatetheir
feelings
verbally.
N=8RN
IDsGen
der
notknow
nCare
homes
[NHSTrust]
Phen
omen
olog
yUnstructured
interviews
Translatable2n
dorde
rconcep
tsn=2
Non
-translatable2n
dorde
rconcep
tsn=1
Aa ]Basedon
long
-term
rela-
tionships
[B]Restits
foun
da-
tionon
trust[C
a ]Gobe
yond
verbalcommun
icationalon
e
Fatally
flawed
pape
r
Doo
dyet
al.,2012,
NorthernIreland
.(S2)
Exploretheexpe
riences
ofRN
IDscarin
gforolde
rpe
ople
with
ID.
N=7RN
IDs♀
5+♂
2Vo
luntaryservice
providingcommun
itycare
inreside
ntial
settings
Phen
omen
olog
ySemi-structured
interviewsThem
atic
analysis
Translatable2n
dorde
rconcep
tsn=3
Non
-translatable2n
dorde
rconcep
ts=0
[Aa ]Basedon
long
-term
relatio
nships
[D]Be
forw
ard
planning
[E]Includ
erelevant
othe
rsto
offerqu
ality
care
[Fa ]
Workagainstne
gativeatti-
tude
sandalienatio
n[G
a ]Raise
thebarin
care
forthispatient
grou
p[H]Ackno
wledg
ethe
person
behind
thelabe
lof
disability[I]
Basedon
eviden
ce-based
practice
Fatally
flawed
pape
r
Fitzge
rald
etal.,
2013,Ireland
.(S18
)
Explorenu
rses´pe
rcep
tions
oftheirrolein
thearea
ofID
care
N=7RN
s♀
7Com
mun
ityreside
ntialservice
Gen
ericqu
alitative
design
Semi-structured
interviewsLatent
conten
tanalysis
Translatable2n
dorde
rconcep
tsn=2
Non
-translatable2n
dorde
rconcep
tsn=2
[Aa ]Basedon
long
-term
relatio
nships
[Ca ]Gobe
yond
verbalcommun
icationalon
e[L]Inter-profession
al[M
]Entail
advocacy
andsafe
guarding
Fatally
flawed
pape
r
Focht-New
,2012,
USA
.(S2
9)DescribeRN
sexpe
riences
ofteaching
forpe
oplewith
IDD
N=23
RNsGen
der
notknow
nLearning
disabilitycommun
itytrust
Groun
dedtheo
ryInterviews,focus
grou
pinterviews,
non-participantob
-servations
Con
stant
comparison
Translatable2n
dorde
rconcep
tsn=1
Non
-translatable2n
dorde
rconcep
tsn=1
[B]Restits
foun
datio
non
trust
[Ga ]Raisethebarin
care
for
thispatient
grou
p[H]
Ackno
wledg
ethepe
rson
behind
thelabe
lofd
isability
Fatally
flawed
pape
r
Appelgren et al. BMC Nursing (2018) 17:51 Page 7 of 19
Table
3Overview
includ
edstud
ies(Con
tinued)
Stud
yStud
yaim
Sampleandcontext
Metho
dological
approach
Datacollectionand
analysis
2ndOrder
Con
cepts
LOAsynthe
sis
Qualityappraisal
(Toyeet
al.,2013)
Hellzen
etal.,
2004,Swed
en.
(S5)
Illum
inatethemeaning
ofbe
inganu
rseforan
extrem
ely
provokingpatient
with
ID
N=8Enrollednu
rses
♀5+♂
3Group
Dwelling
Phen
omen
olog
yNarrativeinterviews
Con
stantcomparison
Translatable2n
dorde
rconcep
tsn=2
Non
-translatable2n
dorde
rconcep
tsn=1
[Ja ]Take
unpred
ictable
situations
into
accoun
tSatisfactorypape
r
Lee&Kiem
le,
2014,U
nited
King
dom.(S7
)
Gaining
anin-dep
thun
der-
standing
oftheday-to-day
expe
rienceof
nurses
working
with
peop
lediagno
sedwith
both
PDandID
N=9RN
s♀
7+♂
2Med
ium-secureand
low
secure
units
Interpretive
phen
omen
olog
ySemi-structured
interviews,
Interpretative
phen
omen
olog
ical
analysis
Translatable2n
dorde
rconcep
tsn=3
Non
-translatable2n
dorde
rconcep
ts=0
[Aa ]Basedon
long
-term
relatio
nships
[Fa ]Workagainst
negativeattitud
esand
alienatio
n[H]Ackno
wledg
ethepe
rson
behind
thelabe
lof
disability[Ja ]Take
unpred
ictablesituations
into
accoun
t
Satisfactorypape
r
Li&Ng,
2008,
UnitedKing
dom.
(S8)
Explorenu
rses´expe
riences
incarin
gfordyingpatientswith
profou
ndlearning
disabilities
N=5RN
s♀
3+♂
2Reside
ntialh
omes
inon
ePC
Tin
theSouth
ofEngland
Gen
ericqu
alitative
design
Ope
n-en
dedsemi-
structured
interviews
Con
stantcomparison
Translatable2n
dorde
rconcep
tsn=2
Non
-translatable2n
dorde
rconcep
ts=0
[Aa ]Basedon
long
-term
relatio
nships
[K]Kn
owledg
eandskillsbe
yond
the
diagno
sis(hereIDD)[L]Inter-
profession
al
Fatally
flawed
pape
r
Marsham
,2011,
UnitedKing
dom.
(S31
)
Exploretheexpe
riences
ofRN
IDscommun
icatingwith
adultswith
IDwho
use
N=8RN
LDs♀
8Descriptive
phen
omen
olog
ySemi-structured
interviews
Phen
omen
olog
ical
analysis
Translatable2n
dorde
rconcep
tsn=6
Non
-translatable2n
dorde
rconcep
ts=0
[Ca ]Gobe
yond
verbal
commun
icationalon
e[E]
Includ
erelevant
othe
rsto
offer
quality
care
[G*]
Raisethebar
incare
forthispatient
grou
p[H]Ackno
wledg
ethepe
rson
behind
thelabe
lofd
isability
[L]Inter-profession
al[N
a ]Und
erstandthecomplexity
ofthisof
patient
grou
p
Fatally
flawed
pape
r
Martin
etal.,
2012a,Ireland
.(S10
)
Exploretheexpe
riences
ofRN
IDscommun
icatingwith
adultswith
IDwho
useno
n-verbalcommun
ication
N=8RN
LDs♀
8Irish
reside
ntialservice
for
peop
lewith
IDD
Phen
omen
olog
ySemi-structured
interviews
Phen
omen
olog
ical
analysis
Translatable2n
dorde
rconcep
tsn=1
Non
-translatable2n
dorde
rconcep
ts=0
[Aa ]Basedon
long
-term
relatio
nships
[B]Restits
foun
datio
non
trust
Satisfactorypape
r
Martin
etal.,
2012b,
Ireland
.(S11
)
Exploretheexpe
riences
ofRN
IDscommun
icatingwith
adultswith
IDwho
useno
n-verbalcommun
ication
N=8RN
LDs♀
8Irish
reside
ntialservice
for
peop
lewith
IDD
Phen
omen
olog
ySemi-structured
interviews
Phen
omen
olog
ical
analysis
Translatable2n
dorde
rconcep
tsn=2
Non
-translatable2n
dorde
rconcep
tsn=1
[Ca ]Gobe
yond
verbal
commun
icationalon
e[L]
Inter-profession
al
Fatally
flawed
Pape
r
Morton-Nance
&Schafer,2012,
UnitedKing
dom.
(S12
)
Exploretheexpe
riences
ofRN
LDanddistrictnu
rses
carin
gforpe
oplewith
aID
attheen
dof
theirlives
N=6,3RN
s&3
RNIDs♀
6Tw
ospecialisthe
alth
care
settings
Descriptive
phen
omen
olog
ySemi-structured
interviewsThem
atic
analysis
Translatable2n
dorde
rconcep
tsn=5
Non
-translatable2n
dorde
rconcep
ts=0
[Aa ]Basedon
long-term
relationships
[Ca ]Gobeyond
ver-
balcom
municationalone[D]
Forwardplanning
[E]Include
relevant
othersto
offerq
uality
care[Fa ]Workagainstn
egative
attitudes
andalienation[G
a ]Raise
thebarincareforthispatient
group[H]N
eeding
acknow
ledg
etheperson
behind
thelabelof
disability[L]Inter-professional
Fatally
flawed
pape
r
Appelgren et al. BMC Nursing (2018) 17:51 Page 8 of 19
Table
3Overview
includ
edstud
ies(Con
tinued)
Stud
yStud
yaim
Sampleandcontext
Metho
dological
approach
Datacollectionand
analysis
2ndOrder
Con
cepts
LOAsynthe
sis
Qualityappraisal
(Toyeet
al.,2013)
Nde
ngeyingo
ma
&Ru
el,2016,
Canada.(S21
)
Explorenu
rses´represen
tatio
nsof
carin
gforpe
oplewith
ID,
interven
tionstrategies
they
curren
tuse,andto
iden
tify
need
sto
ensure
quality
care
N=18
RNs♀
14+♂
42ge
neralh
ospitals,
1men
talh
ealth
hospitaland
7commun
itycare
centres
Gen
ericqu
alitative
design
Semi-structured
interviewsThem
atic
analysis
Translatable2n
dorde
rconcep
tsn=3
Non
-translatable2n
dorde
rconcep
ts=0
[Ca ]Gobe
yond
verbal
commun
icationalon
e[E]
Includ
erelevant
othe
rsto
offer
quality
care
[Ga ]Raisethebar
incare
forthispatient
grou
p[K]Kn
owledg
eandskills
beyond
thediagno
sis(here
IDD)[L]Inter-profession
al[N
a ]Und
erstandthecomplexity
ofthispatient
grou
p
Satisfactorypape
r
Slevin
&Sine
s,2005,U
nited
King
dom.(S2
6)
Investigatetherolesof
commun
itynu
rseforpe
ople
with
IDwhe
ncarin
gfor
clients,andtheircareers,whe
ntheclient
isape
rson
who
indu
lges
inchalleng
ing
behaviou
rs
N=22
RNLD
sGen
derno
tknow
n1UKNHStrusts
Groun
dedtheo
ryIn-dep
thface-to-face
interviewsCon
stant
comparison
Translatable2n
dorde
rconcep
tsn=6
Non
-translatable2n
dorde
rconcep
tsn=3
[Aa ]Basedon
long
-term
relatio
nships
[D]Be
forw
ard
planning
[E]Includ
erelevant
othe
rsto
offerqu
ality
care
[Fa ]
Workagainstne
gativeatti-
tude
sandalienatio
n[G*]
Raise
thebarin
care
forthispatient
grou
p[I]
Basedon
eviden
ce-
basedpractice[L]Inter-
profession
al[N
a ]Und
erstand
thecomplexity
ofthispatient
grou
p
Satisfactorypape
r
Sowne
y&Barr,
2006,N
orthern
Ireland
.(S1
3)
Exploretheexpe
riences
ofnu
rses
working
inaccide
ntandem
erge
ncyde
partmen
tsin
theassessmen
tand
provisionof
care
toadults
with
ID
N=27
RNsGen
der
notknow
nHospital,
accide
ntand
emerge
ncy
departmen
ts
Gen
ericqu
alitative
design
Focusgrou
pinterviewsThem
atic
analysis
Translatable2n
dorde
rconcep
tsn=1
Non
-translatable2n
dorde
rconcep
tsn=1
[E]Includ
erelevant
othe
rsto
offerqu
ality
care
[K]
Know
ledg
eandskillsbe
yond
thediagno
sis(hereIDD)
Keypape
r
Taua
&Farrow
,2009,N
ewZe
aland.
(S14
)
Iden
tifyandde
scrib
ecurren
tnu
rsingpracticewith
inan
inpatient
IDserviceandto
iden
tifyfactorsthat
influen
cecurren
tnu
rsingpracticewith
inan
inpatient
IDservice
N=5RN
sGen
der
notknow
nInpatient
IDservice
Ethn
ograph
yObservatio
nsand
semi-structuredinter-
view
sEthn
osemantic
analysis
Translatable2n
dorde
rconcep
tsn=1
Non
-translatable2n
dorde
rconcep
ts=2
[Ja ]Take
unpred
ictable
situations
into
accoun
tKeypape
r
a=LO
Asynthe
sisinterpretedto
represen
tatentativelydistinct
concep
tualizationof
nursing
Appelgren et al. BMC Nursing (2018) 17:51 Page 9 of 19
LOA syntheses were represented equally among thestudies, regardless of their quality assessment.
Based on long-term relationships [A]The nursing of patients with IDD rests on having along-term bond between nurse and patient; this stoodout as a recurring experience. Such a relationship wasexperienced as a prerequisite to be able to understandpatients with IDD [42, 45, 47–52] and as a prerequisitewhen there was a need to add a therapeutic componentto nursing [51] or when nursing aimed to empower pa-tients [52]. In some cases [42], this LOA synthesis alsoreflected the idea that it could be challenging to forgethe long-term relationships needed for nursing thisgroup of patients. In other cases [52], the RNs felt theyneeded to first create a relationship with relevant othersbefore being able to create a long-term relationship withthe patient.
Rest its foundation on trust [B]Gaining the trust of patients with IDD stood out as rele-vant [48, 50, 53]. This could be an experience of nursingin general but is particularly relevant in order to offerpatients with IDD a secure, stable and predictable situ-ation while making sure they are understood [50]. TheLOA synthesis could also reflect an experience of nurs-ing needing to ensure patients cooperated in differentcare activities, such as tests and examinations [48]. Bas-ing nursing on trust could at times be experienced asneeding to create a trusting alliance with relevant othersbefore being able to create the same alliance withpatients [53].
Go beyond verbal communication alone [C]The need to be able to communicate nonverbally was arecurring experience of nursing patients with IDD [45,48, 51, 54–56]. The RNs experienced nonverbal commu-nication as a complex skill they needed to use constantlywhen interacting with this group of patients [48, 55]. Insome cases, this experience was closely related to achiev-ing nursing goals, such as ensuring no care needs go un-met and to be able to deliver safe, optimal care forpatients [45, 48, 51, 54, 55].
Be forward planning [D]Nursing for this group was experienced as needing tohave a long-term perspective, that is, making it the normto be one step ahead in terms of taking preventativemeasures [52], particularly for older patients with IDD[49], to constantly plan ahead and to double checkeverything [51]. This was particularly reflected as an ex-perience of nursing when the care delivered needed tobe able to offer the patients a relevant environment as
they grow older and offer support in retirement, lossand bereavement [48, 49].
Include relevant others to offer quality care [E]Dependence on and the engagement of custodiansand relevant others was another experience of nursingthis patient group [49, 51, 52, 54, 56, 57]. In theLOA synthesis, this experience was often reflected incare that aimed to offer patients with IDD relevantsupport [49, 51, 52, 54, 57] or care aiming to secureand improve specific high-quality services [51] andsecure safe health services [56].
Work against negative attitudes and alienation [F]The synthesis reflected that the RNs could experiencenegative attitudes towards this group of patients. Theneed to actively engage in working against negative atti-tudes was therefore a distinct experience of nursingvis-à-vis this group of patients [42, 46, 49, 51, 52, 58]. Insome cases, this experience of nursing was related tocounteracting unequal and poorly delivered health careservices [46, 49, 51, 52]. The LOA synthesis alsoreflected that the RNs at times had negative attitudes to-wards this patient group and could be influenced bytheir own perceptions of behavioural gender links [42].
Raise the bar in nursing for this patient group [G]This LOA synthesis reflected a repeat experience ofnursing needing to actively engage in educating, inform-ing and teaching colleagues and relevant others aboutthe care and needs of the patients [49, 51–54, 56, 58]. Insome cases, the experience of nursing and the generalneed to raise the level of competence and knowledgewas related to achieving the goals of nursing on both anorganisational and an individual level. The goals couldbe to offer patients relevant support [56], personalisedand safe health care services [54], secure and improvehigh-quality palliative care services [51], reduce patients’challenging behaviour [52] and work towards societalapproval and inclusion and against unequal and poorlydelivered health care services [53]. In other cases, thisexperience of nursing reflected minimal exposure to thispatient group during nursing education [49, 53], thusreflecting a need for further specialisation to be able toact as a source of advice and support for other RNs [56,58]. The latter experience was also interpreted as affect-ing nurses’ confidence and competence in caring for thispatient group [56].
Acknowledge the person behind the label of disability [H]Acknowledging the actual person behind the label of IDDstood out as an important part of the experience of nurs-ing. This was experienced as a necessity for tailoring nurs-ing to this patient group by, for example, incorporating a
Appelgren et al. BMC Nursing (2018) 17:51 Page 10 of 19
person-focused approach [49, 51]. In particular, this couldmean that nursing focused on abilities instead of dis-abilities [56], especially where the latter was experi-enced as minimising the influence of the negative labelof IDD [42]. Their experience of nursing could also bereflected in educational activities where RNs could feela strong need to raise awareness of this patient groups’often low self-worth and disadvantages [53].
Evidence-based practice [I]Nursing for this group of patients could be experiencedas needing to be based on best practices andevidence-based practices (EBPs) [49, 52]. This was par-ticularly reflected in nursing care plans focusing on be-havioural approaches to enable RNs to deal with CBamong patients with IDD [52], but also in general be-cause nursing could be experienced as needing to bebased on experience, education and research [49].
Take unpredictable situations into account [J]Nursing patients with IDD, particularly patients display-ing behaviour that challenged, could be experienced astesting, unpredictable and dangerous [41–44]. The RNsexperienced a need to be on the alert and prepared forvolatile, unpredictable situations [43, 44] and to be pre-pared to control chaos and turmoil [42]. In some cases,this experience of nursing was related to being able todeliver safe care in all types of environments, whetherhigh risk or low risk [43, 44]. Nursing could also meanexperiencing destructive thoughts about patients and avariety of different negative emotions about the patients[41–43]. In some cases, this meant experiencing a needto emotionally distance oneself and ‘close off ’ [42]. ThisLOA synthesis also reflected experiences of a need tofocus on personal protection and safety [43] and fearsthat violence and abnormality could become the normwhen nursing this group of patients [44].
Knowledge and skills beyond the diagnosis (here IDD) [K]Nursing for patients with IDD could mean experiencinga lack of knowledge and skills relating to IDD [54, 57].Nursing could also be experienced as extra challengingwhen physical ill health became part of the equation[47] or when not knowing where to go for support whenpatients displayed signs of physical ill health [57]. Lack-ing knowledge about physical ill health in general couldalso result in an experience of ill health being under- orover-diagnosed [57] or that nursing did not meet the pa-tient’s actual needs [54].
Inter-professional collaboration [L]Nursing that actively engaged in inter-professional col-laborations with significant others around the patientstood out as an evident experience of nursing patients
with IDD. Working inter-professionally was experiencedas an important tool for ensuring safe care [45, 47, 51,52, 55] but also for being able to offer structured andorganised care [56] and nursing where there were no un-met care needs [54].
Entails advocacy and safe guarding [M]Nursing patients with IDD could be experienced asneeding to take on the role of guardian and spokesper-son, that is, speaking up and acting on a patient’s behalf[45, 46]. This LOA synthesis reflected experiences ofnursing entailing a supporting role in allowing the pa-tient with IDD to be in control of his/her life and auton-omy [46] and in ensuring all needs were met despite attimes experiencing conflicting wishes between the RNsand the patients [45].
Understand the complexity of this patient group [N]This LOA synthesis reflected that nursing patients withIDD could be experienced as more complex than nurs-ing other patients. The need to actively let the patientsset the pace for care, surveillance and/or assessment ofneeds, that is, ‘to allow it to take time’, was experiencedas a major part of the complexity. Allowing time wasviewed as vital to achieve well-executed and optimalnursing for this group of patients [52, 54, 56, 58]. Thecomplexity became particularly visible when care organi-sations did not support patients’ need for long-termnursing care [58] or their individual resource allocationneeds [54]. In particular, the latter was experienced asrestricting RNs’ abilities to deliver optimal care for thispatient group [54].
DiscussionThe RNs’ experiences of nursing patients with IDD wereinterpreted to be reflected in 14 individual LOA synthe-ses. We propose that six of these LOAs (Table 4) aretentatively distinctive and a unique conceptualisation ofRNs’ experience of nursing regarding this group of pa-tients regardless of context. We suggest that theremaining eight LOAs represent conceptualisations ofnursing already collectively described and known inde-pendent of patient group and contexts. Our discussionbegins by addressing the six tentatively unique concep-tualisations and ends by briefly addressing the remainingeight general conceptualisations of nursing.Without the presence of a long-term relationship in
care, nursing patients with IDD is likely to be experi-enced as a challenge and as being at risk of failing to de-liver quality care. In the LOA synthesis ‘nursingexperienced as needing to be based on long-term rela-tionships’, it was reflected that reading, understanding,supporting and empowering patients with IDD was notlikely to take place without nursing that includes
Appelgren et al. BMC Nursing (2018) 17:51 Page 11 of 19
strategies such as building long-term relationships withpatients [42, 45, 47–52]. Regardless of patient group orcontext, it is well known that one of the most reportedessential qualities of nursing is the relationship betweenan RN and a patient [59–61]. In her literature review in-cluding studies outside our context, Shattell [62] sug-gests that in normal cases and under favourablecircumstances nurse–patient relationships occur andwork in short-term care interactions. However, wepropose that in the majority of health care contexts sucha relationship is not aligned to a long-term perspectiveand is particularly needed when nursing this group ofpatients, since creating a foundation for trust in care be-comes a prerequisite for nursing. Belcher and Jones [63]and others [64] have identified trust as a crucial compo-nent in establishing an effective nurse–patient relation-ship. They ascertain that the RN is the key to developingtrust, as the patient is in the RN’s environment and istherefore in a vulnerable position [64]. Patients withIDD can be said to be in an extraordinarily vulnerableposition. Not knowing the patient has been found to re-sult in RNs not being sufficiently confident to build a re-lationship, resulting in inadequate patient care [63]. Thenurse–patient relationship has also been described as animportant factor for patient participation in care [63,65]. It is therefore reasonable to suggest that nursing forthis patient group not based on a long-term relationshipcan adversely influence RNs’ ability to interpret patients’care needs, which could result in lack of reliance, unmetneeds and unsafe care. According to Gámez [66], thenurse–patient relationship should concentrate on theneeds, limitations and potentials of the individual per-son. It is noteworthy that we could not identify any pub-lished studies researching the nurse–patient relationshipin the context of this patient group. The majority ofstudies identified implied that the topic has not been fo-cused on since early in the twenty-first century, suggest-ing this is an area of nursing in need of more in-depthknowledge development and focus.Communication in nursing patients with IDD clearly
demands skills and competences in communication
strategies above and beyond the spoken word. The LOAsynthesis ‘nursing experienced as needing to go beyondverbal communication alone’ reflected how not beingable to communicate impacts the assessment of careneeds and the quality of care provided and results in in-sufficient and unsafe care [45, 48, 51, 54–56]. Our find-ings are supported by Fisher [67], who states thatpatients with IDD often require information in variousformats to help them understand and communicate.Successful communication demands cognitive efforts(ibid) and both verbal and nonverbal cues [68]. Even ifpatients with IDD are able to communicate verbally, dif-ficulties in understanding the spoken word can occur[67]. Such difficulties can be exacerbated by health careprofessionals being prone to using jargon [69], especiallyas patients with IDD often interpret words and sen-tences literally [70]. Furthermore, it is not uncommonfor RNs and other health care professionals to haveproblems understanding what IDD patients are trying toconvey, thus resulting in difficulty assessing their needs[70]. Hemsley and colleagues [71, 72] state that nonverbalcommunication must be used and properly understood tofully achieve the goals of communication. Otherwise thepatient’s mannerisms and behaviour can be misunder-stood and the patient seen as non-compliant when in factthe problem lies in the health care professional’s failure tounderstand the patient’s usual methods of communicating[71, 72] Therefore, there is support for the suppositionthat challenges in interpreting communication cues resultin difficulties assessing care needs [70] and in inadequateand unsafe care [72]. It could be argued that RNs shouldencourage patients with IDD to bring a friend, a relativeor a custodian as this could increase RNs’ ability to under-stand the patient and hence being able to offer relevantcare.It is noteworthy that nursing patients with IDD needs to
include strategies aimed at shattering the stigmatisationthat still appears to be associated with this group of pa-tients and that became apparent in the LOA synthesis‘nursing experienced as needing to work against negativeattitudes and alienation’. Negative attitudes towards
Table 4 Conceptual understanding of Nursing for patients with IDD
LOA Synthesis Nursing for People with IDD* LOA Synthesis Nursing Per Se
A Based on long-term relationships B Rests its foundation on trust
C Go beyond verbal communication alone D Be forward planning
F Work against negative attitudes and alienation E Include relevant others to offer quality care
G Raise the bar in nursing for this patient group H Acknowledge the person behind the label of disability
J Take unpredictable situations into account I Based on evidence-based practice
N Understand the complexity of this patient group K Knowledge and skills beyond the diagnosis (here IDD)
L Inter-professional collaboration
M Entails advocacy and safe guarding
* = LOA synthesis interpreted to represent a tentatively distinct conceptualization of nursing
Appelgren et al. BMC Nursing (2018) 17:51 Page 12 of 19
patients with IDD was found to derive from both the sur-rounding society and the care context [42, 46, 49, 51, 58],as well as from RNs themselves [42]. Our findings implythat this could lead to unequal and poorly delivered healthcare services for this patient group [46, 49, 51]. In a studyby Lewis and Stenfert-Kroeses, RNs were found to holdsignificantly less positive attitudes when nursing patientswith IDD compared to when nursing patients with a phys-ical disability [15]. It was common that this patient groupwould be experienced by the RNs as easily distressed, ag-gressive and less co-operative. Additionally, it was lesslikely that RNs included the patients in decisions abouttheir care, as they stated they would, for example, notexplaining treatment plans or assessing if a patient was inpain [15]. In a study by Cumella and Martin [73], RNs de-scribed feeling awkward and embarrassed when interact-ing with this patient group. Others report equallydistressing findings, such as relevant others hearing nega-tive comments by health care staff about their relativewith IDD [74] and patients with IDD experiencing healthcare staff being judgemental regarding their capabilities,something that obviously was found to influence theirwillingness to seek health care [75]. Bradbury and col-leagues [12] state that discrimination, anxiety and fear areoften underpinned by lack of knowledge. This state of af-fairs is distressing in the context of nursing. One plausibleexplanation for this unacceptable situation might be thatin the majority of European countries nursing educationstill does not offer advanced courses and/or programsdealing with this nursing speciality, in contrast to theUnited Kingdom and Ireland. Bachelors nursing studentsare seldom given any opportunity to interact with this pa-tient group during clinical placements, and neither domost course curricula include any substantial learning ob-jectives regarding the knowledge needed to nurse this pa-tient group. Therefore, higher educational institutions(HEIs) offering nursing education need to developcourses and programs that equip students with theknowledge and skills needed to provide this patientgroup with the same quality health care as providedto the rest of the population.Without the right knowledge of IDD and how to care
for these patients, nursing is likely to be experienced asa challenge. Challenges on both an individual and an or-ganisational level, such as failing to deliver quality, safeand supportive care, became evident in the LOA synthe-sis ‘nursing experienced as needing to raise the bar innursing for this patient group’ [49, 51–54, 56, 58]. Weknow that patients with IDD can experience difficultieswhen interacting with their surroundings and are there-fore a vulnerable population prone to placing great de-mands on the health care system. In addition, theresearch indicates that RNs do not feel adequately pre-pared [76] or knowledgeable enough to support these
patients or to meet their needs [15]. This can causemajor obstacles for RNs in providing appropriate andadequate health care [67]. It is not uncommon thatnursing is dependent on support people, such as custo-dians and/or relevant others, to be able to care for thispatient group [76]. Northway and colleagues [2] statethat this raises questions about social justice and equalrights, as patients with disabilities have the same right tothe highest attainable standard of health care as every-one else. The research has highlighted that RNs edu-cated about learning disabilities are better equipped toprovide good quality care to this group. In those Euro-pean countries offering this type of education and ser-vice, RNs with knowledge of learning disabilities, akaIDD, have been found to play a crucial role in coordinat-ing care between the community and the hospital and inincreasing knowledge, awareness and understanding ofthis group of patients among health care staff [74, 77].Therefore, exposure to and enhancing knowledge aboutthis patient group must become an educational, profes-sional and nursing research priority.The ability to manage the unpredictable interactions
due to CB and the risks CB can pose for fellow patientsand health care staff is essential in nursing this group ofpatients. The LOA synthesis ‘nursing experienced asneeding to take unpredictable situations into account’reflected how RNs can experience a constant need to bevigilant and prepared for unpredictable situations inwhich they need to take control quickly to ensure safecare [41–44]. The above is well established, as CB hasbeen associated with IDD since the mid 1990s. Accord-ing to Farrell et al. [78], one of the most commonlyquoted definitions in IDD literature is Emerson et al.’s[79] description of CB ‘as behaviour of such intensity,frequency or duration that the physical safety of the cli-ent or others is at risk, or as behaviour which is likely tolimit or deny access to normal facilities’ [78]. This defin-ition accurately reflects the experiences of RNs in ourreview. Our synthesis also reflected how unpredictablesituations could lead to RNs experiencing moral distress(i.e. anger and negative thoughts about patients), result-ing in guilt and a need to distance themselves from thesituation and the patient. This is corroborated by, for ex-ample, Whittington and Burns [80]. They found that CBcaused a dilemma for health care staff: should CB beviewed as communicating needs or as a behaviouralproblem? Staff also discussed how to deal with the un-pleasant feelings CB can evoke; unfortunately, their mainstrategies were to avoid the patient and/or to shut them-selves off emotionally [80]. Farrell et al. [78] state it isnot uncommon for health care staff to report negativefeelings, such as guilt, fear and powerlessness, in rela-tion to CB. The implications of this for nursing patientswith IDD, particularly in regard to quality of care, are
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problematic. Training and educational interventions aretherefore required to support RNs in nursing these pa-tients in a clinical context. We suggest that educationalmodels, such as the SVESOS [78] with its three core do-mains of self, others and setting, as the basis for devel-oping educational objectives could be the foundation ofsuch educational clinical interventions.Delivering ‘health care and nursing as usual’ is likely
to fail in terms of meeting the needs of patients withIDD. This became obvious in the LOA synthesis ‘nursingexperienced as needing to understand the complexity ofthis patient group’ [52, 54, 56, 58]. The experiencesreflected that a major part of the complexity was a resultof an organisation not supporting patient needs forlong-term nursing, more time, a slower pace and otherresources that differ compared to those required by gen-eral patients. It therefore seems reasonable to concludethat current health care systems might not be the bestfor this group of patients with complex needs as they donot seem to take into account how their cognitive func-tions differ from people in the general population.Therefore, these systems need to adapt their services.There is evidence of inadequate attention to care needsand inadequate access to health care, including oral care[81, 82]. Others have found that the length of appoint-ments for patients with IDD is the same as for other pa-tients [11, 83] and that RNs’ experiences reflect a lack oftime when nursing patients with complex needs [84].This is noteworthy, especially as we know that this pa-tient group has a higher likelihood of adverse health out-come [81] and consequently are more prone to needinghealth care. Implementing careful individual planningand care coordination by case managers would be a wayfor health care systems to acknowledge and deal withthe complexities associated with this group of patients.
Nursing per seEight LOA syntheses (Table 4) were interpreted to tenta-tively represent a conceptualisation of nursing per se. i.e.a conceptualisation of nursing that has been interpretedelsewhere and describes a universal experience of nurs-ing in general. We will, therefore, only discuss them verybriefly.Trust is a crucial component of nursing despite the
caring context or if nursing needs to be based on ashort- or long termed relationship. Therefore, not sur-prisingly, nursing was also experienced here as needingto ‘rest its foundation on trust’ [48, 50, 53]. Our LOAsynthesis reflected that if trust was not established innursing, the patients were unlikely to cooperate in theircare. Belcher and Jones [63] support this finding, havingfound that if trust is not established between a RN and apatient it could result in an unconfident RN and an un-cooperative patient. Others [85] have shown that patient
satisfaction with care is positively related to their trust inthe RN. In addition to a trusting relationship, all nursingmust involve a broad and long-term perspective, as sup-ported by the LOA synthesis ‘nursing experienced asneeding to be forward planning’ [49, 51, 52]. It reflectedthat not being one step ahead makes it difficult to ad-equately support patients in terms of their health. Thisis of importance regardless of context, as advanced careplanning has been found to reduce unnecessary transfersto hospital and complications associated with being inhospital [86].In order for nursing to ensure that essential human
needs are meet i.e. the fundamentals of care [87], and re-gardless of what context nursing occurs in, RNs might attimes experience nursing as needing to ‘include relevantothers to offer quality care’ [49, 51, 52, 54, 56, 57]. OurLOA synthesis reflected that in nursing, the RNs aimingto offer support or deliver appropriate health care ser-vices had to depend on the engagement of relevantothers. Research has revealed that the involvement ofrelevant others and/or custodians is a crucial componentin delivering care, particularly for vulnerable patientgroups [88, 89]. However, delivering fundamentals ofcare e.g. feeding, drinking, washing and changing is amandatory practice competence within the remit of theRNs role in care (i.e. the duty of care), that should notbe left to significant others to assure that the essentialneeds of relatives with IDD are properly meet when inhospital, as evident in the report from Mencap [16]‘Death by indifference: 74 deaths and counting’. This isparticularly relevant since a reasonable inclusion of rele-vant others in nursing care fits well with the core com-petency of person-centred care (PCC) that our nextLOA stresses, i.e. acknowledging that all patients arepeople. This became evident in the LOA ‘nursing experi-enced as needing to ‘acknowledge the person behind thelabel of disability’ [42, 49, 51, 56]. The RNs’ experiencesreflected that to be able to offer relevant nursing, theirfocus needed to be on the patients’ abilities and not ontheir disabilities. This is translatable regardless ofwhether a patient’s disability is cognitive or physical.Such findings are encouraging and promote the recentfocus [90] on PCC [91], which might have a sustainablefuture in nursing and health care. Others support this;for example, Andersson and colleagues [92] found thatthe starting point for nursing was when the RN ac-knowledged and saw the person behind the patient.Evidence based practice (EBP) is a necessity for all
health care, as indicated by one of the conceptualisationsin our study, ‘nursing experienced as needing to be basedon evidence-based practice’ [49, 52]. The RNs found thatin order to care for a patient based on specific aims,such as reducing CB, and to provide good care in gen-eral, nursing needed to be grounded in EBP. The latter
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is described as a problem-solving approach to the deliv-ery of health care that integrates the best evidence fromstudies and patient care data with clinicians’ expertiseand patient preferences and values [91]. EBP has beenshown to result in higher quality care, improved patientoutcomes, reduced costs and greater RN satisfaction incomparison to care not grounded in evidence-basedknowledge [93]. Relevant quality nursing for patientscan only be a reality if RNs possess a broad knowledgebase and employ nursing practices based on evidence.This became evident in the LOA synthesis ‘nursing ex-perienced as needing knowledge and skills beyond thediagnosis’ [47, 54, 57]. Our synthesis reflected experi-ences coloured by insufficient competences, both whenIDD and somatic health were concerned. It is fair to ac-knowledge that this is not unique for this group of pa-tients. Research has highlighted similar experiences forgeneral RNs in relation to mental health [94] and formental health RNs in relation to physical health [95]. Ina recent Cochrane review [96] assessing the effects of or-ganisational interventions on mental and physical healthcare services for people with IDD, the authors concludedthere is very limited evidence on the organisation ofhealth care services for people with IDD. Therefore,there is a pressing need for high-quality health servicesresearch to identify optimal health services for patientswith IDD and concurrent somatic problems.With the increasing complexity of care, working in
inter-professional teams is important; therefore, nursingwas experienced as needing to be ‘inter-professional’ [45,47, 51, 52, 54–56]. Our LOA synthesis reflected thatworking in inter-professional teams was an important toolin meeting care needs and assuring safe, quality care.Working in interprofessional teams is known to result inimproved quality and decreased health care costs [97]. Ina study by Andersson et al. [92], RNs perceived that aspart of an interprofessional team they were transferringimportant information and knowledge about the patients.Teamwork is also known to improve patient planning, isclinically more efficient and supports PCC [98] and istherefore a vital part of modern health care services ingeneral. Standing by patients and speaking up regardingtheir best interests has always been an important part ofnursing, particularly as nurses are part of an interprofes-sional team. Not surprisingly, nursing was also experi-enced as needing to ‘entail advocacy and safe guarding’[45, 46]. Our synthesis reflected that a patient would mostlikely lose his/her autonomy if the RN did not stand upand speak for that patient; otherwise, the result is unmetand missed care needs. The act of advocacy is of great im-portance and entails RNs being attentive, present and pre-pared to support patients in all situations whilst at thesame time giving patients freedom to decide the extent towhich they want to participate [92, 99].
Strengths and weaknesses of this studyThe relevance of our findings needs to be criticallyassessed by the reader based on our choice and execu-tion of method. The indexing and archiving of qualita-tive research has advanced since Noblit and Hares’ [27]seminal meta-ethnography, but it is well known [35] thatidentifying relevant qualitative research through devel-oping search strings resulting in high sensitivity andspecificity, is still a challenge. Our search strategy wastherefore developed and systematically trialled in closecollaboration with specialist librarians. Free-text termsand database-specific subject headings, manual searchesof reference lists and checking of published systematicreviews were used to identify relevant studies. We ac-knowledge that despite this, some qualitative studiesmight have been missed.Our inclusion criteria were designed to identify the most
relevant qualitative studies for our review question andconceptually rich enough that they contained concepts fortranslation to support the meta-ethnographic approach.To avoid omitting research of potential value for our syn-thesis, both generic qualitative studies and qualitativestudies guided by an explicit set of philosophical assump-tions in the form of one of the known qualitative method-ologies [100] were included. Synthesising studies withdifferent philosophies and methodologies might lead tobias in terms of the range and nature of qualitative re-search synthesised. To reduce this risk, we controlled forthe possible influences of study design throughout ourprocesses. Of note, a majority of the LOA syntheses werefound to be underpinned by second-order constructs fromstudies conducted using one of the established classicaldesigns [100], regardless of how the study had been qual-ity assessed. We suggest that one of the strengths of themeta-ethnographic approach is the combination of find-ings from multiple sources. According to Jamal and col-leagues [101], this increases legitimacy and supports amove beyond narrative accounts to the development ofhigher-order explanations of the phenomenon in foci.There is currently a discussion about i) the importance
of quality appraisal per se and ii) whether eligible studiesassessed as methodologically weak should remain in thesynthesis [39, 102]. This inspired us to use Toye and col-leagues’ [29] approach to appraise both study designsand concepts. Our team appraised the quality of thestudy’s concepts (i.e. second-order concepts) as translat-able or non-translatable and the methods used to cat-egorise studies as FFPs, SPs or KPs [29]. Our experienceof including all translatable concepts despite the categor-isation of included papers corroborates their methodo-logical approach. We found that KPs or FFPs were notmutually exclusive, as both could represent individualtranslatable second-order concepts as conceptually richand insightful.
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By comparing translations, meta-ethnography aims toprovide a deeper conceptual understanding of thephenomenon under investigation [27]. Therefore, wetook great care to ensure our second-order conceptswere firmly grounded in the primary studies by movingback and forth between the studies’ idiomatic transla-tions and the LOA synthesis, thus striving to be true tothe meaning of the original author. We kept thoroughnotes during data extraction in order not to lose theconceptualisation. As the majority of our main LOAswere fairly well represented throughout the 18 includedstudies regardless of their quality assessment, we suggestthat our synthesis reflects well how both general andspecialist RNs experiences of nursing patients with IDDcan be generalised across a European Health Carecontext.
ConclusionsThe relevance of this meta-synthesis lies in the implica-tions the RNs’ experience has for nursing. Our findingssuggest that negative stigmatisation, attitudes and alien-ation still seem to surround this group of patients. Fur-thermore, the health care needs of patients with IDDmight not yet be adequately addressed despite the factthat they have a right to the same highest attainablestandard of health care as others. This indicates thatRNs might be compromised in their ability to contributeto reducing health disparities for these patients.Our findings also suggest that services were not de-
signed to meet the health care needs of patients withIDD. Complex health conditions, communication diffi-culties and challenging behaviours were some of thechallenges the RNs experienced while nursing this pa-tient group. Careful individual planning, care coordin-ation and case management could be ways for thesystem to acknowledge the complexity of this group ofpatients. Additionally, to ensure that the fundamentalsof nursing are met at all times, RNs need to plan and de-liver nursing in a structured and systematic way. For ex-ample, our findings indicate that creating a long-termrelationship with the patient with IDD and going beyondverbal communication alone could be one possible wayto enable RNs to work in a person-centred way. Particu-larly as our findings also implied that focusing on theperson behind the disability label, i.e. PCC in encountersbetween patients with IDD and RNs could be one wayto secure quality nursing for patients with IDD. Thisseems reasonable to suggest as such an approach couldsupport the forging of much needed long-term nurse–patient relationships, which in turn would likely enhanceRNs’ ability to understand patients, regardless of theirmethod of communication. Nursing care models focus-ing on PCC might be adequate strategies in supportingthe configuration of mainstream health care contexts to
meet the health needs of patients with IDD. Large scaleexperimental studies testing the effectiveness of PCCnursing care models to this group of patients in clinicalpractice are therefore warranted.Our review also suggests that with some few excep-
tions, relatively little attention has so far been given topatients with intellectual disability disorders within gen-eral nursing and in nursing research. For general nurs-ing, it is important to consider that nowadays this ratherlarge group of people no longer reside in large institu-tions and that many of them live longer compared toprevious generations. Hence it is almost certain thatgeneral RNs, often in the frontline of home and primarycare, will be of great importance for the health and carefor this patient group. For nursing research, focus seemsto be on challenging behaviour, mental health problemsand communication problems. However, it is vital to notforget that this is not a homogenous patient group. Con-sequently, there is more to explore and knowledge togain within nursing and health care than around thesefew negative IDD phenomena. It therefore, seems rea-sonable that RNs in countries (e.g. UK and Ireland) witha specialist education take the lead in building up a rele-vant body of knowledge in some of those areas of im-portance reflected here. If not addressed, the vitalevidence needed for nursing practice will be lacking, theessence of nursing care not captured and its contribu-tion not accurately valued.A reoccurring theme in our systematic literature re-
view was the lack of awareness and of relevant know-ledge experienced by the RNs, very likely being the mainreason for the ‘otherness’ that still surrounds patientswith IDD. The only reasonable remedy for this is educa-tion. The main question is how to deliver this, as not allEuropean countries, with the exception of United King-dom and Ireland, offer relevant under- and post gradu-ate programme or courses focusing on patients withIDD within different health science curricula. Specialisteducation for nurses caring for patients with IDD mustbe put on the agenda in all European countries so thatthe contribution that RNs on the front line of care canmake in reducing any possible health disparities in thisgroup of patients not are compromised.
Additional files
Additional file 1: Prisma Checklist. (DOC 63 kb)
Additional file 2: Search strings. (DOCX 28 kb)
Additional file 3: Studies excluded after full text reading. (DOCX 22 kb)
AbbreviationsCB: Challenging Behaviour; EBP: Evidence-Based Practice; ENTREQ: Enhancingtransparency in reporting the synthesis of qualitative research; HEI: Highereducational institutes; ICD: International Classification of Diseases;IDD: Intellectual disability disorder; LOAs: Line of argument synthesis;
Appelgren et al. BMC Nursing (2018) 17:51 Page 16 of 19
AcknowledgementsWe would like to thank the librarian Martina Wall at Malmö University for hersupport with developing our search strategies.
FundingThis research received no specific grant from any funding agency in thepublic, commercial, or not-for-profit sector.
Availability of data and materialsThe datasets generated and/or analysed during the current study are notpublicly available due to that it is part of the first authors (MA) doctoralstudies and is therefore expected to be included, in parts, in a thesis bypublication. The data set can, on reasonable request, be made availablefrom the corresponding author after thesis approval.
Authors’ contributionsAuthors contribution meets the standard of the ICMJE criteria. Hence, MAwas mainly responsible for the study inception and design but got intellectualcontributions from GB, CB and KP. MA was responsible for the data acquisitionand for drafting the initial manuscript. MA, CB, KP and GB performed the dataextraction and analysis. GB, CB and KP were responsible for critical revision ofthe paper. GB, CB and KP added important intellectual content. GB, CB and KPsupervised the study. All authors read and approved the final manuscript.
Competing interestThe author declare that they have no competing interest.
Authors’ informationMA is a doctoral student in Caring Science at the Faculty of Health and Societyat Malmö University in Malmö, Sweden. MA also works in the community as anenrolled nurse caring for patients with IDD. Dr. CB is a registered nurse and asenior lecturer at the faculty of Health and Society at Malmö University inMalmö, Sweden. CB also serves as an expert adviser for the Swedish Agency forHealth Technology Assessment and Assessment of Social Services. Dr. KP is aregistered nurse and senior lecturer at the Faculty of Health and Society atMalmö University in Malmö, Sweden. Her research expertise is the oral health ofpatients with IDD. Both CB and KP are experienced in systematic reviews.Finally, Dr. GB is a senior lecture and reader in nursing at the Faculty of Healthand Society at Malmö University in Malmö, Sweden. Her area of expertise isnursing, older people, quantitative and qualitative designs as well as mixedmethod designs.
Ethics approval and consent to participateNot applicable.
Consent for publicationNot applicable.
Publisher’s NoteSpringer Nature remains neutral with regard to jurisdictional claims in publishedmaps and institutional affiliations.
Received: 10 April 2018 Accepted: 8 November 2018
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